Day 19: blue.

Sometimes, even when absolutely everything is going well in your life, you still feel like someone pooped in your cereal bowl. 

It's true. While for the most part I'm a happy person who has everything someone would ever want, I wake up on the wrong side of life. I don't know if I can classify it as depression. I've been depressed before and this doesn't feel like that awful place. Sometimes I'm just....blue. I'm ok. Life is good. Things are still funny. The dogs still make me smile. My girlfriend still makes me feel like the luckiest person alive. It's just that I feel emotionally under the weather. 

I don't know what it is, but I also don't really want to over analyze it. Because sometimes, you just want to blurt it out and let it be. 

Today, I just wanted the weather to match my emotional state of mind. That's all. 

Day 18: Sleep.

....or the lack thereof. 

Ever since I've started this treatment I feel like my insomnia has crept back in. I don't know if it's a coincidence or not but man, I hate it. 

Last night after running around all day doing physical things, I was exhausted. Physically and mentally. What time did I finally fall asleep? (With the help of 5mg malatonin) 3am. I don't sleep until noon, I don't even sleep until 9am. I usually wake up with Tiggz and slowly get out of bed by 8:30. Aside from, of course, the nights when I take melatonin. Then I'm unconscious until 11am. 

I absolutely hate not being able to achieve that comfortable feeling of crawling into bed, physically tired, and turning off my brain for a good night's rest. 

I see my doctor next week and I'm hoping we can address this issue somehow. I miss sound sleep 😩

Day 17: today I hiked, and didn't die.

In the words of Ice Cube, today was a good day. 

More and more I'm starting to let the bad days pass without really paying much attention to them, and really trying to take in all the good days in between. I'm not entirely sure if I'm actually feeling better (because there are still a ton of times where I am very much down and feel like life is sucking me dry) or if knowing I'm not doing this on my own and that there's a bright light at the end of the tunnel is making it easier to deal with the shitty days. When I feel crappy, I simply know it will pass and I am able to reach out to friends and talk it through. Sure I've had some days in the last week or so where I basically spent the entire day in bed, but I also had days where I spent 7 hours at the Hangar watching my league practice and scrimmage and talking to friends I haven't seen in a while. 

I also had a day like today, where we woke up and decided it was time to venture out to this amazingly gorgeous city. I've been wanting to get out to some nature and maybe even go for a hike! We did that and then some. 

We ate and gathered the pups and drove down to Tryon Creek State Park for a much deserved leisurely hike. I could not have been happier with our decision! 

We probably only did about 2.5 miles total, but being outdoors and walking with my most favorite beings made my soul smile. I'm happy to report that I wasn't the one to poop out at the end. It was Ducati....and I carried her the last part of the hike. 

It felt amazing. I felt amazing. 

In fact, I felt so amazing that we decided to drop off the exhausted furs at home and go check out the fair that's going on at the riverfront. After walking around, eating the best Mexican food (frutas and elote included), picking up some ridiculous customized airbrushed trucker hats, and side eyeing all the rides we couldn't fathom riding, we were done with it. 

Still feeling ok (mainly because hydration saves your life!) we decided to drive around and get lost in our new city. We headed over to St. John's where Tigglet showed me Cathedral Park. Obviously I fell in love and want to buy every house in the vicinity. 

At this point (6pm) I was crashing and it was time to head home. 

I'm grateful for the 8 hours of energy that my body gave me today. It's nearly midnight and my body is exhausted but my heart and brain are so amazingly filled with happiness. I couldn't wish for a better way to spend my day. Thank you, Tigglet, for your patience and your willingness to do all the things I love on short notice. Thank you for making my day and my life that much happier.  

Day 11: brighter side of things

It's true that sometimes you find inspiration and hope in the most unlikely places. This morning when I woke up I read my messages, emails and Facebook posts as I usually do, what I wasn't expecting was a heartfelt comment from my girlfriend's ex-boyfriend. He not only made me feel validated (unintentionally we all seek validation when we suffer from something that is, for all intents and purposes, invisible to the eye) but also gave me a sense of peace in this rough patch of life. Coming from someone who could have chosen to resent me or even hate me, his words and sentiments are so deeply appreciated. I took away the message that it's ok to do the best that I can on any given day. Even if that best is waking up and accomplishing nothing. What I accomplish that day is waking up and being happy with my life and the steps I'm taking to make myself healthy again. 

I felt great today. Mentally and emotionally. Physically I had some hiccups (of the metaphoric kind), but that's ok. I'm in a position in my life where I am able to take a step back and take a nap when my body asks for one. And I did just that. A 30 minute nap gave me new life midday today. 

I'm thankful for that. 

I'm thankful for my girlfriend, who understands and supports me. I'm thankful for the people in our lives. And I'm thankful for the person she is because of the people in her life. Past and present. 

Day 10: it's in the boooooones

When I went to see what day I'm on, I gotta admit I was a little shocked and disappointed that it's only been 10 days. 

While most days are about the same as others, there have been about 3 of them where I hated everything in life. Everything. Including the air particles around me. Yesterday was one of those days. In our household we have adopted a cute term for something that feels absolutely awful. You know that feeling you get after walking all day at Disneyland? Without breaks....in the heat....without water....and a huge crowd..? Where you are exhausted and your feet feel like you have cement socks on? We call that Disneyland feet. Well, yesterday I had Disneyland legs. No. I did not go to Disneyland. I walked. About 20 minutes to be exact. We had to run some errands and decided to park the car between stores rather than try and find parking by every store. That ended up being my worst enemy. 

Part of the woes of Lyme disease is that everything just works opposite of how it's supposed to. Your body is constantly in a hot flash, so even walking in decent weather makes you sweat profusely. The sun feels great until that starts to bother you as well. Your eyes hurt from the sun rays. Your hands and joints hurt when you sit in an air conditioned room. There's really no winning. I've given up on trying to find a happy medium because it just doesn't exist. I go from being hella hot to cold and in pain. 

Thanks to a friend who is also going though this, I've learned a few new tricks to combat these uncomfortable things. Lemon water: it's by far the thing that's saved me from tears on a daily basis. The lemon helps detoxify the body and makes it a hell of a lot easier to deal with the pain. Hot baths/showers: same concept. Helps get rid of all the toxins by sweating. No matter how shitty you feel while you're taking a hot bath or shower, you always end up feeling so much better after. 

I've also learned about a few more things that have been somewhat of a mystery.

My recent inability to lose weight no matter what I did, and some serious mood swings that come out of nowhere (most of the times completely unwarranted). I've noticed the weight gain after surgery and thought it was normal since I had not been able to exercise much. I thought getting back to eating better and skating would take that right off. I was sadly wrong. No amount of diet change or activity has even put a dent into the weight. Normally I wouldn't even really notice or care, but I've always been able to regulate my weight fairly easily in the past. (And I don't mean when I was 18). As it turns out, the Lyme actually affects my thyroid. Joy! So while I've been used to a fast metabolism that responds quickly to diet changes, now I'm stuck with an under active thyroid that's basically doing whatever it wants and keeping whatever weight it wants. 

As if it wasn't frustrating enough to feel flubbery and sick, I've noticed weird mood swings that are completely unrelated to anything in life. I get waves of absolute rage and anger that is so bad that it even scares ME. It doesn't last long and I definitely know not to act out on any of those irrational feelings, but holy shit I hate it. It's unfair to everyone around me and it absolutely exhausts and frustrates me. Apparently, however, this is the norm for Lyme. 

I'm hoping as treatment goes on, these symptoms subside and I can function as myself again. 

For now, I understand what's happening and that helps to keep my spirits up. 

Tonight, I'm gonna stick to a plan we made a while ago and try to skate a little at the Oaks 80s Gay Skate! Even if I troll around for 15 minutes and watch the rest, I will come home happy. 

I'm leaving the Epsom salt and bubble bath out so I can jump straight into what will be a necessary bath afterwards.

That's all for now  

Day 4: it herx so bad

I realize that it's only the beginning of day 4 but I wanted to post now because I shouldn't just post when I feel well enough to put sentences together and form a cohesive post.

I woke up this morning (earlier than normal) and have felt progressively worse since then. Everything hurts, my back, my hips and my feet feel like I have cement in them. It feels like there's an elephant on my chest. I can't take a decent breath in and I'm dizzy. I have just about enough energy to take my pills and make my morning smoothie so I can take the probiotics. I can actually FEEL the toxins having a party in my body. 

This is the Herx effect everyone kept asking about. It's here. And it fucking sucks. Really badly. But at least this means my body is fighting....?

I had a really important thing planned today which will have to be rescheduled and I'm beyond disappointed about it. As someone who normally ignores illness and pushes beyond it, I'm in a really strange place right now. I physically cannot ignore this. I physically and mentally cannot push through this. I simply have to accept and realize that today is just a bad day and that's OK! Part of the treatment process is knowing that you will feel worse before you feel better. Much worse. I'm hoping this is the much worse part, because I can't imagine feeling shittier. I have to accept that I'm not "being a pansy about it" and this is real and it will pass. 

Gonna go work through this.....just need to get up. 

Day 1: and so it begins

Day 1

Day one is in the books. 

While I didn't want to bore anyone with the detail of my regiment in my previous post, I figured I might as well mention it now because when I was researching this treatment I didn't find much feedback from people that were using it. It's newer and it supposedly works really well, but not many people have given actual reviews or feedback of their experiences while going through treatment. Every case is different so I'm assuming my dosage is different than anyone else's might be.

I'm on the Classic Pearls regiment of Lightning and Thunder. The classic pearls formulations are made for many things, but the Lightening and Thunder formulas are created for treatment of Lyme disease as its main purpose. There are also the Dragon and Bamboo formulas that will be incorporated but for now, I'm just doing the two.

My first month looks like this:

Lighting:

2capsules 2x day for 3 days

3capsules 2x day for 3 days

5capsules 2x day for 15 days

Then

Thunder:

2capsules 2x day for 3 days

3capsules 2x day for 3 days 

5capsules 2x day until end of week 4

Then we reconvene, see how I'm doing and get the next month set up.

I'm supplementing with liquid vitamin d daily, B12 shots every two weeks, a scoop of high potency probiotics with my smoothies in the morning, and my regular CLA intake (2capsules after every meal). I'm drinking double the amount of water than I usually did, which puts me at just about a gallon per day (I'm trying really hard on this one), and I'm making sure to eat as much fiber as possible. The supplements, fiber and water are meant to help with the removal of the toxins that are produced by killing off the bacteria causing all this hell inside the body. 

Today's experience is that I felt great for about 2 hours after my first two capsules of Lightening; brain fog was relatively low, muscles didn't hurt and my energy level was above average (I even had enough energy to do some drawing). We went to a friend's BBQ and just before we got there my everything dropped to levels well below normal. I was exhausted by the time we said hi to everyone and was just about ready to nap 15 minutes into eating a burger. The brain fog got so bad that on the way home I pretty much just sat in the car and stared blankly out the window as my girlfriend tried to distract me by showing me neat houses on the way home. I've dealt with this for so long that I was able to push through it and still go grocery shopping, run an errand for a friend and cook dinner. Everything gets done regardless of how I feel, but it all just feels like autopilot most of the time. I've now taken the second 2 capsules and my brain fog is much less. I'm still exhausted, but that's probably because I refuse to lay down when my body is screaming for a nap.

¯\_(ツ)_/¯ 

I have to disclaim that today was a relatively warm day for Portland (85degrees) and I am supremely heat sensitive. I generally feel like I'm unable to function in weather that is over 75 degrees and end up having acute anxiety attacks when I start sweating when I'm not doing anything to warrant sweating. In short: I don't do warm weather. 

I'm also day 1 of my menstrual cycle, which is always a fun day. Maybe it's too much information, but it also happens to be one of the biggest issues I have with Lyme. My cycles have become almost unbearable. Not just your regular cramps, bleeding and mood swings. I'm talking days of debilitating heavy bleeding with clots, vertigo, migraines, and exhaustion. 

The combination of these things today made me super bummed and left me helpless mentally. 

I know things will get better physically, but some days, it's really rough mentally and emotionally. 

I'm thankful for friends that understand and my family that always talks me off my mental breakdown ledge. I'm letting myself get in bed and snuggle with my tiny family now....tomorrow, we get to sleep in! 

You put the Lyme in the Coconut...

I have to preface this by saying that as I write this, I'm in the middle of one of my worst flare ups and I've been struggling with cognitive issues for about 2 weeks. So if this reads interrupted or out of order it's because that's how my brain has decided to function at the moment.

I will also forewarn you that this will likely be lengthy. I won't be upset if you don't read it, or take breaks while reading. This isn't meant as a cry for help or even for anyone specific to read. It's really just for my own reference because I've found that writing about things usually helps. 

That being said, I'll explain what all that means:

If you've known me in the last 6-10 years or have asked or have accidentally found out that I've been struggling with my health for about that long (probably longer, but the last 6 or so years it's been exponentially harder to handle). You know that I've been having issues with exhaustion, extreme brain fog, unexplained fibro pain, an unexplained B12 deficiency, balance issues, anxiety attacks, panic attacks and that pesky ole short term memory loss. 

In 2010 one single doctor gave a shit and figured out that the reason I was barely able to function was because my B12 levels were extremely low. When I say extremely low, I mean that my levels were at 126 units. For reference, when one's levels are at 300 units, they experience symptoms of dementia. At that point I had visited close to 10 doctors that all told me I was fine and that it was all in my head. I needed to relax and let whatever "virus" pass and to stop being a hypochondriac. One actually told me I should seek psychiatric help. Not that being told you were crazy wasn't helpful, but as you can imagine, when you're so down and unable to function, hearing that it's just in your head sorta threw me into a depression and a basic unwillingness to live. I had no energy to fight for being awake, let alone trying to convince a trusted doctor that something is very seriously wrong. But I digress. ONE of them believed me and at least figured out a symptom that could be somewhat managed. I've been doing B12 injections at home since then. It's helped me crawl out of my hole of, what I felt was, certain death. I was able to get back to working, back to being a social human, back to playing sports and back to working out and generally being a part of society. I learned to deal with all the other symptoms as long as I was just able to wake up, work and have a life. The quality of that life didn't matter yet. 

I won't go into the blessing that is meeting the person that saves your life by simply caring about you....but know that the only real reason I decided to get back to the bottom of what's wrong is because my girlfriend asked me all the right questions and made me realize that "just living" wasn't what I deserved. I deserved to live WELL and feel WELL. All the time. Not just once or twice a year. 

Last year around August I went to see a doctor for the back problems I've been having. In the process of sorting those out (which culminated with lower back surgery) there were loads of blood tests and other tests. On an educated whim, my doctor ordered a Lyme test. Wouldn't you guess it...both tests came back positive. Lyme disease? But how? When? HOW?? 

The minor details of "how" don't really matter. What matters is, I was officially diagnosed with it and it was like Moses himself parted the sea of confusion and everything made so much goddamn sense! And there I was, 2 weeks away from major back surgery with a diagnosis of Lyme in my hand. Like you, I had no idea what Lyme was, let alone how someone deals with it or treats it...? Was there even treatment? Or do I just forego the back surgery and go pick out a casket to eventually be buried in it. Was I supposed to quit my life and lay in bed and cry? Call my previous partners and tell them "I HAVE THE LYME. YOU SHOULD GET TESTED TOO"? WHAT WAS I TO DO??

I did none of those. I did what any normal person would do. I ignored it and decided to get my back fixed first and figure out this Lyme shit later. And so I did. In September(2014) I had my surgery and instantly had relief from my back issues. I was ecstatic. I would have 6 months of rehab and I would be back on skates and enjoying life! Because, obviously, that's what was missing in my life! That was the reason I felt so shitty for so long and when I got it done, I would be back to being ME! 

Wrong. 

I had completely forgotten about that other diagnosis. LYME. 

After a very long 6 months of inactivity and recovery (and 20 or 35 lbs gained....I stopped counting) I thought I would get back on my skates. Reality and humble pie have never gone so well together as it did that day. After 20 mins of skating around, everything hurt. I saw a dark tunnel in my vision, I felt like breakfast/lunch/last nights dinner were about to leave my body and my entire body cramped up. I was done. There was no way I could skate. 3 days after those 20 minutes of skating, my body was still sore. I was still exhausted and all I really wanted to do was lay down and cry. 

It was time. I had to figure out what to do with this bullshit Lyme disease diagnosis. 

I had read so many articles, studies, forums, and medical reviews on the topic at that point that I had panic attacks just thinking about it. Thanks again to my girlfriend, we were able to sort out that I had two options of treatment: antibiotics (which sounded more like chemo) and Chinese medicine. 

Nothing about bombarding my body with HEAVY doses of antibiotics for months at a time (for God knows how many times in my life) seemed reasonable or rational. If I was already feeling like I had zero health, how would destroying my insides with antibiotics help me feel better?! I decided that was not the route I wanted to try. I'm not everyone, and everyone is not me. That was just MY choice. I'm sure that option helps many people. 

I opted for Chinese medicine. I hesitantly went to see a naturopath. She patiently and attentively listened to my laundry list of issues and even joked with me. She then asked me what I knew about the disease and if I'd read about the options for treatment. I blurted out what I remembered (which probably wasn't much because it's a struggle to remember what happened 30 minutes ago, let alone what I've read in the last month) and told her that between the two options, I leaned more towards the herbal option. She tended to agree but still explained to me the options of both. After hours of discussion and explaining everything, we decided on a treatment plan. We both agreed that since I've had all these symptoms for such a long time, it was best to go the aggressive route. (this is where I realized that I've had these problems for far longer than 10 years....and likely was born with it, or got bitten at a very young age).

I'll spare you the boring details of my prescribed regiment of pills and supplements; just know that it looks and sounds intimidating and I've now designated a shelf in the bathroom just for this.

So today I start my Chinese herbs. I'm terrified. I hate medicine. Eastern, Western, herbal, synthetic....I hate it. I'm terrified I'll be allergic to whatever I need to take. I'm terrified I will feel worse. I don't even know if that's a possibility....can someone feel worse than shit on a daily basis? I guess it's time to find out. I'm armed with bottles of water, activated charcoal and fiber supplements in case all hell breaks loose and I need to flush my body. I feel like a helicopter mom....on myself. I hate the anxiety to starting something new. Something that will probably make me better. Probably. Hopefully! 

So there it is. I put my faith into a couple of bottles of tactfully blended dried up herbs. My wellness. My happiness. My life. My BEING. All sitting and patiently waiting to see if this will help. If it will help me get ME back. Someone that laughs. Someone that speaks and thinks like an educated human. Someone that can carry on a conversation without pausing and losing train of thought. Someone that can function past 10pm. Someone that has the physical abilities of a trained horse. Someone that enjoys life. 

I just want myself back. Simple as that.

That's the story. 

I'm prepared to answer questions, lose and gain friends, feel worse and feel better, and most importantly to fight this shit tooth and nail. If not for anything, I hope this helps someone else in any small way.